I have decided to write my next blog in two parts, because I doubt that Charlotte’s nap or my brain will last long enough to get all my thoughts into one blog.
PART ONE: more on Charlotte’s prognosis
I am not sure if I have told you all this or not…sorry if I am repeating myself. When we discovered that Charlotte had Spina Bifida, the ultra sound revealed a lesion that was thought to be 1cm by 1cm and in the sacral region. It was the most severe form of SB but in the “best” location. To repeat information that I mentioned in earlier blogs; the doctors told us that with a sacral lesion her bowel and bladder would be most affected and the feet would possibly be involved. After Charlotte’s birth, they discovered that the lesion was four times the size they had thought. It sounds a bit shocking, but we knew the ultrasounds were approximations, and many things would be unknown till she was born.
We had our first SB Clinic this past Wednesday. It was a multidisciplinary clinic, meaning we met with most all the doctors that will be involved in Charlotte’s care. Our first appointment was a hip ultrasound, because when Charlotte was discharged the orthopedic doctor saw slight dysplasia in the left hip. We met with the OP doctor who told us her hips looked great. I know I’ve mentioned earlier that she was keeping her feet flexed upward. I thought it was much like her thumbs in that she just had tight shin muscles that needed to be stretched out. This is not the case. The OP doctor explained that Charlotte’s lesion was actually lower lumbar; meaning the nerves that go to her calves are not functioning. He assured us that she would walk but that she would need braces on her shins to keep from rocking forward. He also said there seemed to be a lack of lower back muscle which means she may need canes that attach to the wrist to keep her steady. But how much back muscle she has is still hard to determine since she is so young. He wanted us to continue daily stretching out her ankles so that they do not get into a locked position. They do not like to brace the ankles until the child is starting to pull up because they feel that braces may impede with normal baby development. I want to clarify that these are life long needs. In other words, she will be wearing braces for the rest of her life because it is not that the muscles need strengthening but rather that the muscles are not functioning due to lack of nerve activity.
We also met with neurology who said she was doing very well. But they want us to keep a close watch, because shunt malfunction rate is over 50 percent in the first year. We also discovered that if the shunt malfunctions, it typically takes several replacement surgeries before a new shunt will function properly. Scary to hear but I continue to pray for strength and peace from all these fears. We meet with several other people and then last with the rehabilitation doctor. The rehab doctor agreed with the OP doctor that Charlotte should be able to walk with braces. He did warn us not to go by traditional child development. Charlotte would most likely take longer to walk than the average child (maybe around 2) and would do things at her own pace. It was a long day, and I’m glad that we get a break for 6 months till the next clinic.
Yesterday (Thursday) we went back to Children’s to meet with our Urology doctor and to test Charlotte’s hearing since she failed the first test when she was in the NICU. The Urology test was to assess bladder function and make sure she was not retaining urine, which can be detrimental to the kidneys. Basically, a catheter is inserted in both the anus and urethra. The bladder is then filled with a special liquid and x-rays are taken. The doctor told us that Charlotte can hold an appropriate amount of liquid, and she is not currently retaining. She actually leaks both urine and stool pretty constantly. With her, there is no such thing as a clean diaper but a less dirty diaper. This test is done yearly unless she starts to have urinary tract infections. I honestly thought the test would be miserable, but she handled it all great. In fact, she didn’t flinch. My dad and I have been wondering how much feeling she has at her rectal and urinary openings. Other factors and the test have made it evident that she does not have sensation in these areas, much like her feet. This means I must be vigilant about watching and assessing her because she will not be able to feel if she has issues in these areas. It is like her feet in that if her shoes are too small or she has a splinter she will not know it. After urology we had the hearing screen. It lasted almost two hours because Charlotte had to be totally still with things stuck all over her head and in her ears. She did not like it at all. It was a miserable process, but I’m happy to say that her hearing is just fine.
SB is a discovery. No doctor can tell you exactly how your child will function. We will have to wait to see, and waiting is hard and scary. When we were at the hospital, I saw a beautiful girl around five who had SB. The defect was most likely in a similar area as Charlotte’s, because she could walk but was wearing braces. It was a comfort and hard to see her all at one time. I saw some of my daughter’s possible future. I love Charlotte beyond measure and think she is perfect. I will love her no matter what. I am fully aware that she is blessed. She will walk, she currently does not have to have catheters, she has a huge support system, and she has a loving heavenly Father. But I grieve too. I can’t help but be a little sad that she won’t be able to take ballet, that at some point in her life some one ignorant will probably make fun of her braces, that she will have to work at things most children can do easily, that cartwheels will probably not be in her future. I try not to think about if she will be able to dance at her own wedding. I know that she will surprise me in so many ways. She already has. Her resilience and sweetness take my breath away. I know we will find other hobbies and she will excel in her own way. But for a moment I have to shed some tears.
I am fully aware that God works in miraculous ways. That any child is born is a miracle to me. I would be eternally grateful if God chose to fully heal Charlotte of all her issues. However, I think my role as her mother is to accept the things God has placed in my life. He has given me this wonderful, all together perfect angel baby to care for. My daily bread is Charlotte with Spina Bifida. I am asking Him for wisdom, patience and strength on raising her just as she is. The miracle that I am daily praying for is the battle that Charlotte will one day have. Charlotte probably will not notice that much is “wrong” with her for awhile. But one day she will have the knowledge that in the eyes of medicine she is not whole and perfect, in the eyes of the world she functions differently. She will have a choice to make. She can rail against this body God has given her and think He loves her less because of it. Or, she can choose to accept her body as is and realize that God created her just as He wanted her: “I will praise you for I am fearfully and wonderfully made.” It will not be an easy thing for a teenager in a world so bent on bodily perfection to do, but it is the miracle I pray for. I pray that her struggle will make her know Christ more fully, and that He will use her to advance His kingdom in mighty ways. Of course, I will be beyond ecstatic if I wake up tomorrow and Charlotte no longer has SB. But the miracle that I am seeking for my daughter is acceptance and heart that loves and seeks to glorify the King of kings.